Intro:
I have a 18 year old grandson with UC. His parents and grandparents(me) are trying to help him with this journey. We just started Adams diet and need help with what’s the best way to introduce foods.
My Grandson’s Colitis
Davian ( my grandson) found out Nov 2013 that he had UC. After bleeding, suffering in silence, for several months he finally came forward that something was wrong. He lost over 25 pounds and was pooping mostly blood.
We rushed him to the hospital and there he stayed for 4 days. His colonoscopy showed what an awful mess he was in.
The Dr. Put him on prednisone, Asacol, and sent him home with the instructions, eat whatever you want but take these pills. Well, it didn’t take long before we realized that the pills weren’t working. He still was bleeding and in tons of pain.
So back to the doctor for additional meds and upped prednisone.
Well the story is the same. Some good days but most are not so good. Davian is a senior in high school and wants to run track but he is so afraid to be out on the track and need the bathroom. We have joined forces with him to try and find some relief. Now he is taking enemas every night plus his 18 pills a day.
His mother came across Adam’s story and we bought his books. After devouring this book we found new reasons to be hopeful. Davian’s began his new diet yesterday. It will be trail and error but if he can live without all these meds he would be such a happy boy.
He had Swiss steak lady night and is in awful pain today at school. We didn’t know that tomatoes were bad for him. Lesson learned.
Any help with diet for him while he gets his system settled down will be greatly appreciated.
It’s so awful to watch this amazing young man deal with UC. All through this process he as kept his senior grades at 3.6 so as you can see he is trying hard to move forward…his girlfriend is so supportive and wants to learn how to help him too.
Thank you
Grandma Judy
I have a 18 year old grandson with UC. His parents and grandparents(me) are trying to help him with this journey.
Hi Judy,
Thanks for sharing your grandson’s story, and I hope he is doing better.
As for your question of what foods to introduce and when, that’s a great question. Unfortunately, there is no silver bullet answer to this like most UC related questions. But, I’ve learned that by and large, vegetables such as carrots and for many others zucchini are often much easier to handle and digest easily when cooked compared to tomatoes (especially in the early days of getting on with a new diet treatment for UC). I myself would not eat tomato while in the middle of an active flare up. Nor would I eat alot of other things that I would eat right now when without symptoms.
The biggest component of my diet while getting out of a flare up has always been high quality protein. Baked chicken has always been a lifesaver for me and many other UC’ers. Yes, it does get boring, but getting past active symptoms and on to a new level is crucial and it often takes some boring foods.
Another thing to think about is drinks. I’m not sure what he’s drinking right now for fluids, but its absolutely vital in my opinion to stay away from things like soda and other sugary drinks when symptoms are active (heck, I haven’t had soda for years and don’t plan to). Water is again boring, but super important to help get the gut bacteria back in check.
I wish you all the best,
Adam
Try reading ‘breaking the viscous cycle’ this includes recipes, some of the food is very nice too! I did this for a couple months! Also looking into a Chinese herbalist may be a good idea for your Grandson, I couldn’t take the medication prescribed from hospitals as I got an allergic reaction. So I went to my local chinese herbalist and she made up nutrient teas specifically for me, I have them twice a day. When I first started going I also had accupuncture and chinese massages! Please look into the natural route instead of relying on hospitals. Your Grandson can fight it himself he just needs more nutrients to help him! The body is so clever. I was diagnosed with UC at 17 and I’m now 19, I do eat what I want now but I do stay clear of take aways etc.
I’m so very glad that your grandson has your whole families support behind, this is something that’s so important. Its an embarrassing (to explain) and hard illness but it’s so much better when your family is informed and can help you get through the tough times. Like Adam said I think its trial an error with some foods but the books should really help your grandson. I wish him remission and comfort. Positive vibes his way!!
Thank you Cheyenne… Davian is my son and all positive vibes are appreciated!
The story here is about my heartfelt son- he is amazing in every way and has a heart of gold- unfortunatley he was struck with this disease diagnosed in November. He is a man of strength so thought it was un necessary to tell me about the issues he was having. Of course I noticed the rapid and significant weight loss, took him to Dr’s etc and none of them ever mentioned UC. It was not until that dreadful night in November while I was at my parents house visiting that I got the call he needed help… my mother and I rushed home in the midnight air to get with him.. immediatley took him to the hospital where they FINALLY diagnosed him with UC. The medicine they put him on did havic to his body. I made a choice to take him off some of the immune suppresent drugs which in all honesty started to help. He (davian) and I made a commitment to each other that we would change up his diet to Adams .. that also seems to help altough still experiencing diarreaha there is no more blood and proudly say now down to 1 pred pill a day and soon to be 1/2 tappering off … Then as some of you knwo there also comes other significant “things” that can pop up with UC… he has since been diagnosed with CMV so there is more rounds of doctors and more rounds of anti viral pills…. we went to the infectious control dr yesterday more blood taken and he stated this infection was due to the immune suppresent drugs he has been on…. as you all can clearly understand I am beyond frustrated and concerned… I feel they (the hospitals and dr’s) “get us” when we are so scared and vulnerable with the onset of this disease- giving us every pill I think there is out there I have taken a firm stand for my son…. with the help of my mother we have searched every site, read every blog and are not without hope we can get himback to normalicy. He is now in track and living a beautiful life (senior in high school) and even though he has slight symptoms still I am confident our next step is seeing the “formed poops” which I told him will be a huge celebration in our house!!!! I am beyond proud of my son …. He is truly my hero
Oh thank you for your comments and encouragement . He is a true fighter and has a heart of gold so with all the information we can give him and support he will find comfort. Now he has CMV along with his UC so double challenged BUT he is out running track at high school and drinking plenty of water. With Adams diet and adding a few things as he goes. He will never give up.
What a wonderfully supportive grandmother and family! I hate to hear of anyone struck with UC, let alone someone young. You’re correct…it is truly heartbreaking to see what UC can do to a person and their life.
You are all on the right track. Meds do not work. You will learn that more and more, the longer you, or someone that you know, has UC. Natural is the way to go and what works is different for all of us. Trial and error…diet, probiotics, olive oil, aloe, L-glutamine, vitamin D and others…there are so many natural things that can really help.
Things will get better, they always do, and soon your grandson will be his old selof again…trust me!
:)
The story here is about my heartfelt son- he is amazing in every way and has a heart of gold- unfortunatley he was struck with this disease diagnosed in November. He is a man of strength so thought it was un necessary to tell me about the issues he was having. Of course I noticed the rapid and significant weight loss, took him to Dr’s etc and none of them ever mentioned UC. It was not until that dreadful night in November while I was at my parents house visiting that I got the call he needed help… my mother and I rushed home in the midnight air to get with him.. immediatley took him to the hospital where they FINALLY diagnosed him with UC. The medicine they put him on did havic to his body. I made a choice to take him off some of the immune suppresent drugs which in all honesty started to help. He (davian) and I made a commitment to each other that we would change up his diet to Adams .. that also seems to help altough still experiencing diarreaha there is no more blood and proudly say now down to 1 pred pill a day and soon to be 1/2 tappering off … Then as some of you knwo there also comes other significant “things” that can pop up with UC… he has since been diagnosed with CMV so there is more rounds of doctors and more rounds of anti viral pills…. we went to the infectious control dr yesterday more blood taken and he stated this infection was due to the immune suppresent drugs he has been on…. as you all can clearly understand I am beyond frustrated and concerned… I feel they (the hospitals and dr’s) “get us” when we are so scared and vulnerable with the onset of this disease- giving us every pill I think there is out there I have taken a firm stand for my son…. with the help of my mother we have searched every site, read every blog and are not without hope we can get himback to normalicy. He is now in track and living a beautiful life (senior in high school) and even though he has slight symptoms still I am confident our next step is seeing the “formed poops” which I told him will be a huge celebration in our house!!!! I am beyond proud of my son …. He is truly my hero
This is a story from my daughter who is the mother of our amazing Davian. She added so much more about him than I did.
Hi Gram Judy…yes…great support. :-)
Adam’s books (everyne should read) are Awesome along with this site. You can search SCD,natural remedies, etc.
Breaking the Vicious Cycle would be great for you to read and re read!
The Pecanbread site…especially the Stages was a humongous help to me.
Try and have him and you//family keep track/journal which foods were good, bad, neutral and even bm’s!
Like Adam said…basic proteins, a lot of soup and well cooked vegies, fruits for now…add slowly. It takes a lot of patience, but it is worth it. Natural not processed foods. Be careful with adding almond flour and there are other alternatives to add later.
Best of luck and health…slow and steady…i read somewhere once a great analogy comparing it to a skinned knee/open wound that keeps getting scraped…takes a while to heal that up.
Best, Shelly
My son is my hero!!!! I love that child and thank you all for the kind words and support
Judy
Follow peoples advice if that’s the route you want to go down, but whatever he does, until it’s under control, under no circumstances should he stop/reduce his medication unless instructed to do so by his Drs
Thanks Tom. Davian is still taking his Asacol and he is down to 1 prednisone . No bleeding so the diet must be helping. I just cant believe his Dr told his mother to feed him whatever he wanted. Now that he is careful what goes in his body he is in better shape.
Hello Gram Judy,
So sorry to hear that your Grandson is going through this. Anyone being so young dealing with this breaks my heart.
Here are some suggestions you might want to try. Probiotics (50 Billion) (Ultimate Flora) Every morning …..about 2 hours later things he can try for breakfast…..banana, scrambled eggs or smoothie using Soy milk with ice teaspoon of cinnamon and 2 teaspoons of honey. Look for foods that are anti-inflammatory.
Baked Chicken and fish. Ground beef like hamburger 1x a week…..l do a lot of seafood crabs scallops and shrimp …baked potatoes. Apples with peanutbutter. I use honey as a substitute for sugar….green tea and water for drinks. Stay away from the white stuff….I hope this helps. I have been battling with this for 15 years and just got over another bad flare last year.
Good luck =) If you have any questions feel free to email me if you want barbbque17@comcast.net
Thanks Barb. It helps so much when people like you care enough to offer your experiences and food ideas . If you don’t mind, we would like to pick your brain when we run into a food question. He is not much for seafood but is eating most of the other things you mentioned.
You take care and thanks again
Grandma Judy
I am reading this crying. Going on day three of research since my sons colonoscopy Wednesday. Took him a year and a half to come to us about his rectal bleeding. Diagnosis is UC. He is only 15 and otherwise very healthy and active in sports. I am lost and scared. He is resisting the sopposatory he was given. Just keeps saying why can you not just give me pill. He has dealt with it on his own for this long and acts like it is not serious since no other symptoms yet. The more I read the more upset I get knowing how serious UC can become. I should feel lucky my son is not in pain and suffering like Davian. But I do not feel lucky at all. I know we as a family have a long way to go and are just getting started. I feel thankful I have ran across this site. Already being a great resource and first place I have just let it all go. Thank you for listening.
I so sorry to hear about your son. I was talking with Davian and thought it would be good if he and your son could talk about this UC. I’m sure Davian could offer your son some support and suggestions. His mother Angie will be adding some things also. I’m surprised that his dr didn’t put him on prednisone to help stop the bleeding.
If you think that the boys should talk just let me know and I will give you my email and we can get the boys phone numbers exchanged. Stay strong you are not on this journey alone.
Judy
Finally getting on line again today. I was thinking too much research driving me crazy. Will check with my son if he would like to talk to Davian. We are going back to Dr tomorrow. Hoping he offers up more info and biopsy results. I really appreciate the information. I will ask the dr about prednisone. My sons father is already questioning the ability of this GI dr. Not sure if I should research to find some kind of spealist who deals with UC or all GI drs should be capable. I am on CCFA site now looking in my area.
You really need to find a UC specialist. I believe a regular GI doctor won’t jump on it. Davian saw 3 reg GI doctors with no results. That is why he was in such bad shape. Always ask for the best. Davian’s Dr is the head of the UC board in the Seattle area. Your son needs the best.
Good luck.
Judy
Davian is my son and I know all to well the frustration that comes with the unknown. I had days and honestly weeks where all I wanted to do was bury my head I was so frustrated. Lucklily I found a Dr (when my son was in hospital we were refered) He is a GI Dr that specializes in this disease. Now I will tell you this is not at all easy.. far from it .. BUT if you find a good DR you will also find the knowledge you need without trying to do all the research yourself.. (not to mention “google” can wrap you up in things that have nothing to do with this , taking you to other sites and lets be honest it is scary!) I did all of that.. it got me knowhere but even more frustrated. Now a few tips for you- Prednisone is great “at first” you will see immediate relief of his symptoms but it is short lived.. you will need to ensure he is also being treated by other meds… (Davian is on Asacol) my son is now down to 5MG pred a day and SOME symptoms have come back .. but (heres my frustration) I dont know if it is from the anti viral meds , the asacol (because side effects for all are diarreah) or the disease that has the diareah back… although no blood he still has at least 8 bathroom breaks a day. ( I though consider this leaps and bounds from where we were) Long and short is there is no miracle drug but there are meds that can help ease the issues. One thing I never (at first) believed is this is 90% mental I can only imagine how these kids feel when all they do all day is think about if they can make it to the bathroom, can they play sports, can they go on dates etc because of constant fear of what may happen. But that will pass.. especially if your son finds even days of “better” which he will ! My son and I am sure yours are fighters… and once they get a handle on this mentally and decide to fight rather than linger in the “what ifs” it will and does get better. What helped my son alot was when my husband and I literally emptied the cabniets at home of ANYTHING he could not eat.. then he felt more normal… we eat or prepare nothing that he cant so he has lost the sense of “im so different” Im only into this 5 months but with all the research I have done, the Dr’s visits I have come to terms that this is not FATAL which in my mind it was .. I felt since I couldnt make it better , who could.. I couldnt stand to see my child in such pain.. you as a mother will know when pills need to be cut back.. you will know when diet is mandatory and you will know how to ease his pain. When my attitude of this changed so did my sons and now we fight it. He and I even got matching “quote tattoos” and when ever either of us are down we tell the other to look at the tattoo and remember there is NOTHING we cant conquer if we do it together. YOU are a fighter too mom otherwise you would not be on here asking for help and ideas.. you are definatley on the right path!!!! I am overjoyed to see mothers out there doing what it takes to help and protect our children. I hope even a small portion of what I put into words helped you … as you know though its hard to put in words what we are goign through on a daily basis….. best of luck to you ….. YOU GOT THIS!
Angie, you have no idea how much this helps. Will give this dr one chance today and if I feel he is not giving enough input or help, I am moving on. Hate to say his dad (my ex) is right, but will not rule it out as we are both on same page that our son is number one priority. Yes my mental stress also mounts dealing with my ex husband on this and not allowing that additional stress to show to my son Theo. we are in the San Francisco Bay Area. With Stanford and other great medical facilities, I am going to seek out the best for my son. Theo seems to be a bit better starting off on the symptom side than Davian, but that is what I am worried about as if the dr will not take it so seriously. But I am realizing if we do not jump on this now can get much worse. The main symptom is the serious rectal bleeding. He claims he does not have diarrhea but when home during day I see trips to the bathroom at least 3 times a day and by the sounds coming out of the bathroom sounds pretty fluid to me. I am feeling I need to get him on same page with me to totally honest with me and work to also take responsibility to help me help him. I know he is sick of me asking him questions and looking at him worried each time he leaves the bathroom. Before we realized what was really going on with him, I blamed it on hemeroids and heavy weight lifting for football conditioning he does daily. As of last week woke up to an entire different world. All he shows concern about is his ability to keep conditioning and preparing for his first season on varsity. Even at 15 he is 6ft 1 in and 190 lbs. I will maybe try that angle this week. If he does not get this under control could also affect his conditioning and playing ball. All they focus on now is weight listing and gaining body mass. I am telling him he may not be getting the results he wants due to his condition getting worse over the last year when he did not tell anyone. Next research is his trainers and coaches keep talking about work out shakes vitamins and creatinine. With his issues going on already told him this may not be a good idea for him. Or maybe could help. One of my questions for the doc today. He already had blood work prior to getting scoped last week that showed elevated levels of natural creatine and primary care dr said yes could be from the heavy lifting but gave orders for more blood work as can be linked to kidney function issues. Researched creatine level and kidney issues with UC and did not really find any. Will get the blood work redone this week. I know this is just the beginning and it DOES really help having another mother to talk to. You have no idea. Woke up last night even worried about the biopsy results today. Urrrrrrrgggggg.
My son was very active in football(until broke shoulder and had 3 surgerys on it) UGH… but make sure you have them review for anemia although im sure they will .. with all the bleeding it can come on quick! Please keep me informed how the tests come out… I am here to listen and trust me there will be days where I will need to vent … Im blessed Davian is not bleeding anymore.. now to tackle the bathrooon visits! At 14 it is difficult to talk about “poop” with “the mom”… im thankful davian is the most unshy kid on the planet LOL You will find answers and you have the right medical facilities there clearly … Davian lost 20 lbs in 2 months when this first started.. thankfully gained it all back plus some.. I just pray to god that your son finds healing soon…. please keep me updated.. im thinking about you
Today.
Saw dr. With dad me and Theo. dr said from scope only saw inflammation in rectal colon. But biopsy samples show inflamagion in small intestin. So could also involve crones. Not checking spelling. Tired and drained. Anyway discussed many options with dr and he said symptoms still mild so wants to start with non sterirod treatment to stop bleeding. Before appointment son was excited to tell me two best bowl movements in a while with only blood on toilet paper. Guess we all got optimistic. Regardless WE need to face the long term situation. in front of dr and dad theo acted like no issue on the mesalamine suppository. All you needed to do was push/ask. Regardless got prescription for oral form. Made dr tell us all of other side effects. Well…. Still recovering from attempt to make him do it. Failed. Feel like i fail as a mother. I refuse to guilt him into putting something up himself but he saw full mommy breakdown tonight. He promises he will do it tomorrow. What can I do.? Hold him down. Take things away. Cant do it with all he is going through. Again feel like bad mom. Not going to give him so called oral and other issues without trying suppository. He promises give him one more day to accept the idea. I walked out and cried. Never do that in front of him. Maybe he will realize how serious this is with strong mom losing it? Leaving him alone to sleep for school. Me up. Maybe he is up. I know he is thinking. He promised he will o it tomorrow. Next day he will go to dads house. Maybe he will start all over again with delay. I know this is a little step compared to all the other situations shared. I feel this is huge to us. If I can get him past this first step a 15 we can accept and start the management process. Tired. ….but strong tomorrow.
In regards to the suppositories my son did not at all adapt to the idea at first either… what I did was tell him why armed him with the facts (including what may happen if we dont at least try) then I told him please try it… you do not need to tell me you are doing it or when you do it. I told him to lock his door and when he felt comfortable he can do it. I put it in his hands.. when I did that he did it- (saw the bottle in his garbage can) I didnt ask him if he did it… but when he got home from school i simply said “nice work” smiled and walked away… he smiled back:) Now i will tell you he only did it for 4 days then adametley stopped.. he was getting up 3+ times a night goign to bathroom from the liquid in his system…. I dont beg him to do it…. I gave him facts, I gave him consequenses and I gave him honesty.. he took what he wanted from the conversaton tried it at least … but please be prepared for more bathroom breaks at night from the liquid and prepare him so he will not be frustrated.. (no one told us of that)……. were all the same with this.. lets face it NO BOY or girl for that matter wants to put a foreign object in their butt.. BUT i think if they know it is annoynous and on their own time and no one can just “walk in” on them doing it.. the tension may become less and less for him. Best of luck mom….. and PS it is OK for him to see you cry… sometimes they need to (I did it numerous times)
BUT- Davian was on ennemas not suppositorys.. so your son may not have as many bathroom issues at night! :)
Update. Yesterday apologized to him for getting upset. He does not need to see me that on top of dealing with his own issues. We spent a lot of time together during the evening. Did not talk about. He has his driver permit so took out for his first lesson with a stick shift. Was good bonding time. He stayed up pretty late. I had taken out of fridge so not to be too cold. Had some Vaseline and a rubber glove there too. He came in and said alright where is it at. He went in bathroom for about five min came back out and grabbed the Vaseline. Back in for another five then straight to bed. I am 90% sure he did it! He goes to his dads house next 7 days and is ready to give him support on it as well. The best thing this week is he said past two days bowl movements much better. No blood in toilet only when he whipes on the tp. I am thinking the probiotics I started him on last Friday are really helping!!!!! Next dr visit on April 23.
Also so tied up in the start of our journey. How is Davian doing this week?
Nice work MOM!!!!! im 100% positive he did it!!!! That is fantastic! And best part is now he knows he can do it and no one will make fun of him, ask him a million questions etc…. Davian is doing good.. go back to dr next week to see if we can take him off the infectious control meds… I am so pleased with my son and his efforts to make this better.. just found out last night he is at 3.67 GPA (senior year) and ran his first track meet this week.. so my baby is back in the saddle again :) I am beyond happy to hear your son is doing what he needs to get this better… what a great night for you!!!!!!
Great for Davian!!! Amazing with all going on kept his gpa up. I am going to keep visiting this web site and reading the ideas and stories. I have to say this group and your family was a life saver for me. I know the care and fight is a life time one but have much more hope now. Thank you Davian Angie and Judy.
God bless Christi and Theo.
Look forward to continuing to share stories and updates. ;)